Joshua’s Defective Heart

April 3, 2010

We received word today from Stanford that Joshua’s heart is inoperable due to the severe pulmonary hypertension he has.  This confirms what UNM and Cincinnati have stated as well.  So where do we go from here?  The best doctors in the world have looked at his case and have stated that they can’t do anything for him.  What is a father supposed to do with this information?  A father would do anything for his children and here I am without any ability to take this away nor the world’s best doctors.  This is what breaks my heart.  We (man) are at a point in medicine that was able to give us (Kelli and I) more time with Joshua but not fix him.  I have been quizzing doctors on the why’s and how’s and collecting documentation that proves what they say is true but I still feel like I haven’t done enough and poor Joshua is the one that is left in the dark.  What gets me is that for months we have known about his heart condition and for months the doctors have been telling us that this repair is “easy” (albeit it is still open heart surgery on a newborn) with great success rate in the 98%-99% range.  However, since his heart really isn’t the issue, this fact does not matter.  The real issue is his lungs.  CDH stopped any kind of normal growth of the right lung and some of his left lung.  Being premature by 10 weeks means that his lungs were not given the full chance of developing.  These two facts have, in effect, killed my son.  The Cardiologist stated to us that the only reason why he has been able to live this long is because of his heart defect.  So, his heart defect is both a blessing and cursing.  My understanding after quizzing the doctors is that blood, like water, always wants to go toward the low pressure.  Blood normally flows from right side of the heart (right side of the heart applies less contraction due to the close proximity to the lungs) to the lungs because of the low pressure.  In Joshua’s case, the pulmonary hypertension is so high that the blood that enters the right side of the heart goes immediately to the left side of the heart via the AV Canal Defect (hole in the heart).  Little blood makes it to the lungs which is why he is needing the ventilator and oxygen to stay alive.  If the surgeon was to go into the heart and patch the hole, the pulmonary hypertension would not allow the blood to flow into the lungs thus creating a “backup” of blood.  This “backup” would cause the right side of the heart to see much more pressure than it is designed for thus causing heart failure over time (time meaning if he made it through heart surgery and post op alive which the big centers are saying he cannot).  Thus we have reached the ultimate conundrum.  Joshua’s heart defect is the only thing that is keeping him alive at this very moment.  Repair it and he will die of heart failure either in surgery or after.  Don’t repair it and he will die because of circulation problems.  So, armed with this info, what are loving parents who do not want to see their child suffer, do at this time?  Do they go through with the first 2 major surgeries to repair the bowel and the diaphragm, both of which are very intensive, painful surgeries that he could easily die during or after?  Or do we do comfort care and finally get all those tubes and wires off of him that I know are painful as it is and let him go?  I hate that we are forced with a decision like this.  This is causing me to not be hungry and not able to sleep well.  I hope and pray that God would take him from us before it comes down to that because at least I didn’t have anything to do with it.  Then again, what is a loving parent looking out for your child’s best interests supposed to do?  I wish I could trade him places so that I could suffer for him and he can live his life.  Unfortunately, I am stuck watching from the outside and not able to do a thing about any of it.  I hope no one is faced with the same situation as us and I know that there are other parents out there that have faced, are facing right now, and will face in the future and that just breaks my heart.  It really isn’t fair at all.  We were supposed to take our sweet healthy baby boy home with us so that we can love him for a life time and play and fight with his brother.  The decay of this life has robbed us of so much joy, love and little experiences and have robbed Matthew of his little brother.  That is why it isn’t fair.  As I see some of the worst people give birth to multiple kids at a time or drug addicts that have healthy child after healthy child, Kelli and I are here wondering why we didn’t have a healthy boy to take home.  We did everything right, we loved him from the moment we knew he was growing inside Kelli.  At the same time I feel blessed to be Joshua’s parents because most people would have thrown him away like trash.  As I was doing my research, I came across a horrifyingly disgusting statistic that 92% of all babies with Down’s Syndrome are aborted!  So, at least with us, Joshua had a chance at life.

Sorry for all the rants but I am just beside myself.  What is a parent supposed to do in a situation like this?  What is the most loving thing we can do for Joshua?  These and many other “impossible” questions are the ones Kelli and I are going to have to answer very very soon.  It saddens and sickens me to even think about it but no one said parenting was easy now did they.  Please continue to pray…

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17 Responses to “Joshua’s Defective Heart”

  1. Anonymous said

    The most loving thing a parent can do right now is turn it over to the Lord who created Joshua. “He gives and takes away, but blessed be the name of the Lord!” You have done everything humanly possible, and now it’s up to the Lord to do whatever is best for Joshua. We hope for a miracle and God knows what’s best.

  2. Shelly Moore said

    Alicia & I are so heartbroken that another family is facing this horrible dilemma. Alicia told me you have said almost exactly the same thing she felt when she was faced with having to make these kind of hearbreaking decisions 3 weeks ago. You are right, it is NOT fair. Not fair at all…

    Joshua is such a lucky boy to have a family such as yours. I’m sure he is proud of you both & it is obvious of how proud you are of him. All we can offer is our deepest wishes for the Love of God & your family and friends to give you the strength and comfort as you walk through this most difficult time. Our hearts are with you.

  3. Julie Huizenga said

    Jeff and Kelli,
    As Resurrection Sunday looms with the next sunrise, please be encouraged and comforted in the fact that you chose to give Joshua life. As Pastor Ron would say, God gave you that “one in a million child” because YOU are the “one in a million” parents. He doesn’t make mistakes. The number of days for all our lives is known only to God who knew us before the beginning of time. It’s only natural that you have alot of “whys” as his parents and you would gladly lay down your life for his. But God has stated in his Word that the clay cannot ask the potter “Why did you make me thus?” A difficult passage for sure and those of us who have never been in your place cannot possibly know the depths of your anguish. Our best defense is always prayer and you have a mighty prayer force behind you. As you try to get some sleep tonight, place this all at the foot of the cross and let God care for you and your family. He is in control and will not slumber. Wait patiently on the Lord. Joshua needs God’s miraculous healing power. I pray that it is so unmistakable that those attending him will have no other way to explain it but divine intervention. He is able. That being said, Christians pray “Thy Will Be Done” and whatever comes to pass there is peace in knowing that. My thoughts and prayers are with you.

  4. Mary Campbell said

    Lord Jesus, I pray that You would heal little Joshua. You created him in your image and You have numbered the hairs on his little head. You have given this sweet little boy life; life that all of us who love him are so grateful for and blessed by. I pray that You will show Yourself to all who are touched by Joshua’s life in such a way that there is no question that it is You who is in control and it is You who gives life. You have numbered Joshua’s days. Right now the doctors believe there is no hope. I pray that You will show the doctors that only You can give life, heal, and take life away. It is Your breath of life that was breathed into Joshua’s lungs. It is Your will that Joshua still breathes and fights for the life You’ve given him. I pray that Your will be done in and through Joshua’s life no matter how long his days are. He is your precious child. Thank you Lord Jesus for giving him to us even if it is only for a short time. We will always be blessed and grateful for every single moment You’ve given. I thank You and I praise You for Joshua. May You rescue Joshua as his name states in Your way and in Your time. I love you Lord Jesus. Amen.

  5. Jennifer Tenney said

    I am so sorry! It is totally not fair … not fair at all. I don’t understand it. Joshua is a warrior and he has definitely touched and inspired me. He is making a difference in the world.
    Hugs,
    Jennifer
    Mom to Dakota 12-25-2008
    RCDH survivor

  6. Debbie Mitchell said

    “Because I live, you will live also,” John. Jeff and Kelli – my heart breaks for you. Can God heal Joshua? With every fiber of my being, I can assure you, yes, He can! But sometimes that healing takes place in heaven – not here on earth. Is God in charge? Yes! Has He given you Joshua as the ultimate ugly joke? No! He gave you Joshua to love for as long as you have him – not just his time here on earth, but for eternity. From everything you’ve said, Joshua will soon go home to God. He will be in no more pain – you both – your whole family – will have unimaginable pain. Joshua won’t cry – you will cry until there are no more tears. Joshua will be free and running in God’s home – with family members he’s never met. You will be here wrenched with what-ifs and whys.

    Father, God – be with Jeff and Kelli and Matthew and all of the family. Are we giving up? NEVER. Are we letting You have complete control? Yes, we must. But we desperately ask for Your comfort and Your arms to surround this family. You have given Joshua for a reason. It is You we have to depend on. In Jesus’ name, Amen.

    Jeff, you said, “What’s a parent to do?” Love your baby – with all that entails. I, too, pray that God will take away the difficult choices you face. But love Joshua. That’s all a parent can do.

  7. Tracy Meats said

    Jeff and Kelli, I am so very sorry you are faced with these decisions. It is not fair and my heart breaks to read your post today. You are amazing parents and you gave Joshua life, where many parents would have ended the pregnancy after they found out their child had Down’s.

    Praying for Joshua…he is such a warrior and has touched my life. Praying for Matthew. Praying for you, Jeff and Kelli, for understanding and peace in what lies ahead. May you be surrounded by much love and comfort today.

    Thinking of you,
    Tracy, Ian’s mom from CHERUBS

  8. Linda Mages said

    As soon as I woke up this morning I felt that the right thing to do is to allow him the surgery to get his kidney, liver, and intestines where they belong… out of his chest wall… and give his lungs a chance to function without the pressure they’re putting on them… this way your giving him the best chance for survival that man can give him at this point… and then you will know u did everything humanly possible to give him a chance to heal and live… and that part is up to GOD… I LOVE U GUYS and support any decision you make…
    xoxo Linda.

  9. Ian Hodge said

    I pray for your family that God will give you wisdom, and that as the God of all comfort He will give comfort to you and to Joshua. I can only imagine how unfair this feels, but in another sense this is as fair as it gets. If we must live in a world so broken, it is only fair that with as much as God loves Joshua, God gave Him parents who would exemplify that love to him as well. It isn’t fair that you don’t get to keep your son, but how wonderful that amidst Joshua’s suffering God planned that Joshua got to have you!

  10. Christie Larson said

    Jeff and Kelli,

    My heart has been aching with you. Even though I have not had to go through this, as a parent, I think about what it would be like if this was my boy. I am praying and crying with you. I would love to see God do the ultimate miracle and heal Joshua completely on the inside but I don’t know God’s plan. I am praying that God reveals that plan very soon so you are not forced to make these awful decisions.

    Hugs, Tears, and Prayers,
    Christie Larson

  11. Loretta Lamb said

    I understand your anguish with why horrible people seemed blessed in our eyes yet those who are good and that we love are taken are being taken from us. I pray that God will show you His view of all that you have gone through so far. I know for a fact that your unwavering love for Joshua, as broken as he is or appeared to be from the onset, has had a tremendous affect on the people here at Crossroads and those who have access to my facebook. You are phenomenal christian parents and I’m just continuing to pray for a miracle for you all. May God continue to guide you and give you direction to Joshua’s care. Cling to Him and cry out for understanding. He will answer you.

    Lots of love, Loretta

  12. Kathy L said

    Continuing to pray for you and Joshua….

  13. Charlie and Becky Loftus said

    Our hearts break for you all. Your situation is so eerily similar to what we experienced with our little Sammy only a few months ago… heart defects, pulmonary hypertension, chromosome issues, dire predictions…. We were blessed with four months with our Sammy before he passed into the arms of the Lord. All we can do is pray that you have the strength to accept what God has planned for you. We found strength in each other, our 8-year-old son, Charlie, and in God. Lean on each other, talk to each other, love each other. Trust in God’s plan.

    We are praying for you all.

  14. pamela said

    I’ve been following your journey, learning about your sweet boy from the Cherubs group. Is there no chance that repairing the CDH would lesson the pulmonary hypertension?? My heart aches for you and you little precious son. Our son has cerebral palsy as a result of his CDH, and we have had people ask us if it wouldn’t have just more humane to let him go at birth and not have him suffer the way he does today. My answer to that, and what I hope you will consider and know, is this: The Lord could have taken him at any time, and he didn’t. He was meant to be in our family for a purpose. Your son has fought so hard, if the Lord wants him, he will call him home, but in the meantime, fight for everything you feel like you can. This is your special child, not the doctors. You will raise him, if he pulls through, not them. I hope and pray for you and joshualevi constantly.. Don’t lose hope. You are his parents and you will know what to do and when to do it.

  15. Melissa Mercer said

    Jeff and Kelli
    I think all of us want you to know that reguardless of what the doctors think and feel YOU the family are surrounded with the most positive and loving Hope and support that can only come from a your larger family of God’s children. As hard as it may be try to remain possitive. God’s miracles always seem to show through best when the rest of the world says no or it can’t be done.
    Your support of Joshua and his courage has already touched and inspired so many. I know I can honestly say for myself that being able to follow your story has brought my own personal relationship with God and my own kids (ages 3 and 2 months) so much closer. I pray for all of you nightly (something I have not done in many years) that you will not give up faith and hope and that God will bless your family and most importantly Joshua with the strength to make it through this time and perserver.
    My heart breaks for you and what you are going through. My 3 year old was born with holes in her heart as well and we were terribly freightened and stressed about having to make medical decisions about going through surgeries. Her little body has amazingly been able to heal her wounds thus far without surgery but I can only imagine how you must feel with the list of issues Joshua has.
    I pray that you find the strength within yourselves to do everything you can to help Joshua and that you will be able to feel satisfied in knowing that you did and then leave the rest up to God and your little man.
    Be strong and cling to God with all your might and he will show you the way.
    Many tears and Prayers and a whole bunch of hope,
    Melissa

  16. nicolle said

    It breaks my heart that you have to make this decision. Have they talked to you about comfort care? You are amazing parents and have explored every avenue in which you possibly can to help Joshua.
    I know the pain you are feeling knowing there is no fix for your precious baby boy. It sucks, and is not fair!
    I pray that Joshua and his angels makes the choice when it is time for him to go, but if you have to know that you have done everything and are doing what is “best” for your sweet baby boy. Here for you anytime you need to yell, cry, vent, or just talk. Sending you lots of love and hugs.

  17. Becky St.Francis said

    I am so sorry to hear that you and your family are going through something so tragic. No family should ever have to go through this. I have been following your updates daily and everyday it brings tears to my eyes that someone so little has to once again go through this. I just recently lost my son in November to CDH. He also had the hyperpulmonary tension and the heart defects that Joshua is going through and I pray for him everyday. I had to come down to making the decision to let him keep surrering or let him be free. That was the hardest decision I have ever had to make, but deep down I know it was the right one. Sometimes I wonder if I made the right choice and then I think back to all the surgeries and all the tubes and realize he is free from pain. I pray for Joshua to keep growng and that a miracle will happen. Our thoughts and prayers are with not only Joshua but Jeff and Kelli also. Be strong guys and try to hang in there. Lots of thoughts and (((HUGS))) Becky

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